Surgery with Dr Chang…. Liz… Chicago

imageThis is an update from Liz about her surgery with Dr Chang… It sounds like it has gone very well..

“My Surgery is completed!!! My surgical date with Dr. Chang was on June 19 and I am back home now and the waiting game begins. I will start at the beginning of my surgical journey and hope I can answer any questions anyone may have.

My husband and I arrived in Chicago on 6/17- on 6/18 I was scheduled for 2 appointments-one with the Lymphedema Therapist to measure my left leg as compared to the good leg; the second apt. with Dr. Chang. Both appointments were short and to the point and then we went back to the hotel room which was right on campus-the Quadrangle club. We were within walking distance to the hospital. I did not want to stay in downtown Chicago because the trip up to the medical center was a distance by cab and I was afraid of arriving late for appointments or better yet, I did not want to arrive late on the OR date!!. Furthermore, the Chicago Blackhawks won the Stanley Cup that weekend and it would have been chaos cabbing it up to the medical center.

All day on 6/18 I ate light because I was nervous; my last bite of food ending ay 8pm. On 6/19, at 5 am my husband and I walked to the hospital (about 3 blocks). Everyone was helpful and courteous-a new modern facility-courteous, professional service-everyone was very helpful and calming. I was escorted to the pre-op area where I changed into the OR gown, had an IV inserted into my arm and answered questions, while my husband stayed in the skylab area (7th floor). The gave him a “ringer” like they give you in “Outbacks” (to let you know when the table is ready) it is given so that the hospital staff can let the family know the progress of the patient. Once my pre-op tasks were completed, they allowed my husband to come to my floor to be with me. He was escorted by a patient representative-they were all so thoughtful and professional.

Finally, at about 7 am the anesthesiologist and residents came over and eventually took me into the OR. I said the Lords prayer in Greek as they were wheeling me into the OR!!! Next thing I knew I was in the recovery room- the surgery took about 4 1/2 hours-Dr. Chang did a LNT, and 2 lympho-venous bypasses below my knee. I had no incisional pain at all- I had 1 Jackson Pratt (JP) drain in my right neck and 1 JP drain in my left groin hooked up to a Doppler so we could hear perfusion of the lymph nodes. The only pain I had post operative was a severe anesthesia headache and some nausea. I was treated for the nausea with an IV antiemetic, Zofran. The headache persisted from 1 pm till 8am the next day-they could not give me anything for the H/A (not even Tylenol) because they did not want me to have anything in my stomach in the event I had to go back to the OR. Finally, morning came (6/20), and I was beyond hungry -it had been 36 hours without any food or water-LOL -I ‘room serviced’ almost everything on the menu-(not really)-all I can say is they did finally give me some Tylenol and about 12 hours later the world was a better place-my husband googled anesthesia and the first side effect is headache- so then I understood. I did not have any incisional pain at all. From the first touch of my calf, it felt soft to touch–that was such an emotional lift!! it brought tears to my eyes. The leg was wrapped with the comprilan dressings and the Doppler continued making swishing sounds all night long. The doppler was connected to my left groin. By morning, the foley catheter (which collected my urine) was removed and I was allowed to get out of bed and walk to the bathroom- I would disconnect the Doppler and walk to the bathroom. When I returned to bed, I would reconnect the Doppler. Now it was Saturday morning, 6/20. I was getting antibiotics through the IV for prophylaxis, and IV fluid but within 12 hours, the IV’s were discontinued because I was eating and drinking. On 6/21, the PA came in to see the leg and unwrapped it- when I saw my leg for the first time, I was really thrilled at the decrease in the measurement from the knee down to the ankle. Dr. Chang said I was a prime candidate because I had been wearing compression garments for the last 3 years and also using a nighttime garment and the LE was controlled. I have worked very hard in all aspects of this chronic disorder and all I want is my life back to some sort of normalcy. While in the hospital, I would disconnect myself each hour from the doppler and walk up and down the entire corridor- I figured the corridor length was approx. 1/8 of a mile and shaped like a horseshoe; it was not difficult.

From the groin to the knee it will take from 6 months to a year or maybe longer to see a difference. Depositing a lymph node into a new spot is like putting a seed in the ground-flowers don’t spring up immediately it takes a year or two to see growth from that seed–the lymph node is the seed and it grows over time to become a channel of roots and stems. On 6/22 I was Discharged from the hospital-one drain was removed that day. I still had one drain pinned to my t-shirt but I didn’t care. We took a bus into Chicago and walked a good distance. We even went up to the top of the Trump Tower and had cocktails! On a pedometer I brought with me from home, the distance we walked was about 7 miles each day-not speed walking but casual walking. We stayed at the hotel on campus until 6/25. My last appointment with Dr. Chang was on 6/25. He checked the drain sites and removed sutures in the groin-by now both drains had been removed.

It was an uneventful experience-Thank God. Meaning, what had to get done, got done without complications-now, all I have to do is wait for the results. I feel I have done all there is to do for this disorder and it is time to get on with my life.

I am thanking God for His guidance and standing by my side through this long journey- I know that I would not even know Dr. Chang’s name if it were not for this fabulous blog site-I believe God led me to this blog site and allowed me to gain knowledge and humility from all of the fabulous and heartfelt stories I have read over the last 2-3 years. Thank you all for your prayers during my surgery. I am praying for you all as well.” Liz

Thanks Liz it is good to hear that you are going so well… It sounds like a very positive experience.. Thanks for sharing with everyone ..Helen

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Surgery with Dr Chang for arm Lymphoedema

imageKim shared her surgery story via a comment so once again I have created a post so everyone can see it… Sharing our stories helps others with their own journey. Thanks Kim

“My transplant story started when I saw an episode of grey’s anatomy. The has a breast cancer survivor with lymphedema that was having surgery to alleviate the symptoms.

I had stage 3a breast cancer. Right breast and a large amount of lymph-nodes removed. I went through chemo and radiation, but it was during my reconstruction that my right arm started to look like it belonged to Popeye. I went to my oncologist and after a few tests was told I had lymphedema. Months of therapy and wrapping at night, compression sleeve during the day and extreme low sodium diet. I managed for 4 years, carrying my wrappings and compressor all over the world I travel a lot as an engineer.

I started researching Dr Chang about 2 years ago. He was in Houston at that time and the work was experimental. When I checked back last May, 2014 he had moved to the university of Chicago and the were getting more approvals than ever to perform the surgery. I made the appointment and my family and I went to Chicago. I met with Dr Chang. Nice man. He explained I was a good candidate for the bypass and transfer. I was told each state is different for the coverage on this surgery and that they would submit and let me know. I got approved quickly. I scheduled for December 2014-during my winter break. James-my patient advocate was very nice, the only stress I had was discontinuing the tamoxifen for the two weeks prior to surgery. Dr. Chang indicate it makes the blood thicker and could interfere with the surgery.

We arrived the day prior to the surgery and went to the university of Chicago for pre-surgery stuff. I was able to have my arm measured in Texas to bring with me. Dr. Chang took before pics and other details. We went back to the hotel and went to bed early. Had a 5.30am surgery so we were up at 3 am. Family packed up and went by cab, you do not use cars unless you live there. We were first into pre-surgery and got a bed quickly. I went in about 7.30am and stayed way longer than expected. I went into recovery at 2pm. My recovery was supposed to be 30 minutes but I stayed in there until 9pm. I had breathing complications I wanted to hold my breath:). My family finally saw me at about 7 pm and left for the hotel. I was moved to a room and told that I was on bed rest until they determined if I needed further surgery. Therefore the catheter had to stay in and a no food order was given. I was miserable. I had not be told to take a laxative prior to surgery and I wish I would have. I had a machine hooked up to my arm to determine flow, a Doppler. It sounded like a heart beat. I also had a machine for pain medication. I did not use at all and pain was not bad. I was told my bypasses, I had 3, were working well. I also had the node transplant from my neck. Very long scar, just another badge.

I had to stay in the hospital Friday through Monday and stay in town until Wednesday. They wanted to make sure there was no complications. We flew United into Chicago. No cuts in fees.

Many doctors came in daily to listen. I had a complication, the drainage from my neck was not clear and it was determined that I could no longer eat fat until the drain was removed. I am currently low sodium, under 1000 mgs a day. They took fat away from me and I lost 12 lbs in 3 days. When my diet was changed, I got no explanation why. I had to find out on the Internet. In fact they cancelled all of my food orders and I got no dinner one evening. The nutritionist popped by but did not understand lymphedema so I sent her on her way!! I finally got to see the arm when the physical therapist stopped by. It is smaller, I am happy to report. Oddly the docs that came by never checked it. It was a bit depressing to take a wrapped arm home.

I was finally released. I had two drains to come with me. One under my right arm and one in my neck. I was able to get around but tired easily. Our Travel day was Christmas Eve. I called tsa cares the day prior to leaving. They were not great but they connected with the tsa at the Chicago airport-who was amazing. I was so concerned they would try to unwrap me or try to pat me down. They did not. They met us and escorted us through, they even walked us to our gate. I cried in relief

We got home… tubes dried up over a few days and my husband removed them, Dr. Chang showed him how. About two weeks later my husband removed my sutures. I did have a deep suture that created a bump but is going down. No driving, lifting or sex for 4 weeks. I am past 4 weeks now. Arm is still wrapped. I unwrap an hour a day for showers. I will be measured for a new sleeve in another 3 weeks. I am told the transplants could take up to 1 year to work.

My arm is looking good. I am still low sodium.

Learnings: take a laxative prior to surgery, ask about required bed rest, stay on your diet and wrapping prior to surgery.” By Kim

Thanks Kim for sharing this with us.. Could not agree more re the laxative as would have been much more comfortable post surgery!!! It is great for everyone that we share our experiences… Helen

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